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Why Making Goals is Important Despite Having MS

After my first MS attack in 1998 landed me in the hospital for five days of round-the-clock Solumedrol IVs and diagnostic tests, I was sent home with a script for oral steroids and a suspicion of MS. No follow-up appointment, no advice. Although I showed all the signs, the docs made it clear that I’d have to have another attack and another battery of tests before an MS diagnosis could be made. I was told to call them if those symptoms ever came back. “Until then?” I asked. “Carry on with your life as if nothing happened,” was all they said.

As if nothing happened

Although I recovered about 75% of my abilities, I would permanently sport foot drop after walking for 45 minutes and fight heat intolerance and fatigue in general. But the experience changed my psyche forever. It was as though I’d survived an earthquake or a war. The fear, the confusion, living through the whole ordeal burned into my memory for good. Carpe diem, I’d always heard, a clarion call to the young who still exist in that sweet, sticky honey comb space where they haven’t yet shriveled up from the drudgery of being in the adult world. Youth is for making memories that we can reflect back on when we’re old. That must have been from a Kodak commercial I saw long ago. For the times of your life, a plaintive female soprano warbles over an image of a backyard family barbecue. Nobody’s in a wheelchair. Everybody is 20 pounds thinner than the average American, their features alarmingly flawless. The dads have all their hair and moms still sport 22-inch waists despite having given birth to four kids. Considering what food sits on the picnic table it’s likely nobody has heard of Type II diabetes. For the times of your life.

My dreams and goals

Everything that happens in the present will become a memory. Are good memories the only ones worth embracing? Should I live in the now with my guard up, cautiously participating in only Kodak moments so I make only happy memories? I tried that once during a relationship that hid a lot of lies behind cheery civility. That fake cheeriness felt almost like the real thing, a thing I held in memory that was fast becoming ever more distant. A memory I could no longer trust. But no matter. I’ve only really learned about myself through failures, rejections, betrayals, constructive criticism, and the ever-present troll bait. One thing I learned is that I have little control over all the crap that comes my way. But there is one thing nobody can crap on: my dreams and goals. Especially if I keep them to myself.

I’m not the person I once was

Setting goals and dreaming new dreams is just as important as challenging our ever-shrinking brains with Sudoku puzzles. Before I developed MS, I did Sunday New York Times crosswords in ink. I stopped that years ago; the Sunday paper is too expensive and I have trouble concentrating long enough to labor over its dissertation-length articles and ego-killing puzzles. At least, that’s what I tell myself. To be honest, I’ve lost my confidence. I’m not the person I once was.

What lifts me out of my daily routine?

But who is? And what really defines who we are anyway? Some people define themselves by their accomplishments. I define myself by my goals. My goals are guided by my ability to imagine a thing that doesn’t yet exist. My Kim-ness is couched in a future only I can imagine. Imagining a plot synopsis for my yet-to-be-drafted second novel is the one thing that lifts me up and out of the drudgery of my daily routine. A routine that has worn a groove in my soul that gets deeper the more I allow myself to be defined by how weak my legs are whenever I tote a garbage bag to the dumpster. The one thing that MS hasn’t touched is my writing voice and the ways my mind works.

It doesn’t matter if I have weak legs, numb legs or no legs. I don’t need an able body to reach towards the dimmest star in the night sky.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • chalknpens
    2 years ago

    Angry with the diagnosis of MS? You bet. I was expecting a diagnosis of Parkinson’s Disease, as many in my parents’ generation had that one, and I had experience in supporting my parents who both shared a PD. My (then) neuro snarkily replied that perhaps they had MS and not PD, as there were no MRIs to discern between the two. I was relieved, as I taught in a second floor classroom, that my legs worked fine … no elevator in our school building … just a long ramp at the other end of the building. I don’t like ramps: they throw me off balance, going up or down. What I didn’t foresee was the cognitive damage and its effects on my once-strong memory for details and confidence in making decisions. I had to retire when I could no longer recognize my hundred students in the corridors and worse, could no longer recall their individual learning styles. As a team teacher with a special ed. background those failings were crushing.

    And so I retired earlier than planned, missing my significant goal of a maximum pension. My new goal was to open and run a successful quilt shop within my husband’s wooden toy shop. He and I worked together well -friends for fifty years, and married for forty six, wwe were living our happily ever after, doing everything together and sharing our happiness in our shops with all who visited. And then last Christmas, he died, suddenly.

    I’m still working on the old goal … the happily ever after shop … and I’m living in our final, forever home … and hiring people to take care of all that my husband so capably handled … maintenance, repairs, upkeep … but I have made a change in the center of that goal … no longer focusing on happiness … now focusing on goodness and sharing …
    I teach elders and youngsters how to machine quilt … I give two scholarships each year to our local graduating seniors who are not going on to college but to work … People ask me how I can stay here alone: our daughter and grown grandchildren live almost two hundred miles away, and our son and his wife live nearby but both work many hours. I try not to lean on any of them, but still drive to visit them when I can. And I miss my husband daily … I recognize how dependent I was on his unconditional love and his physical strength. I listen for his footsteps. I want him here, with me, in the house and the shop that he worked so hard to maintain and improve … he deserves to be here and appreciate all of it. But he is gone, and my new goal is meant to one day find my own way to be with him for our eternal happily ever after.

  • Kim Dolce moderator author
    2 years ago

    chalknpens, thank you so much for sharing your story and your gut with us, I’m still tearing up over how movingly described your losses. I’m so sorry you lost your husband after making and working towards a shared goal together.Your strength and flexibility have made you so able to set new goals. May your road be smooth and peaceful as you make your way to be with your loved one once more. –Kim

  • Julie
    2 years ago

    I think I was probably angry after my diagnosis. My husband left and I lost my job. I wish I still had my job. hahah ok that had to be said.
    I was always a planner. Everything in my life had to be planned out. After MS showed up and the ex left I decided planning and goals weren’t going to be for me.
    Now, 17 years later I have been making small goals. I do still work the crosswords in ink. I plan for every year when my son flies back home from NYC to visit. My big goal is to see my grandkids grow into adulthood and settled in a family and jobs. They are 12 so I think I’m half way there. Goals are good. I’ve just learned how to not be too disappointed if they aren’t met. Always have a plan B or just roll with the punches. This is my way of dealing.

  • Kim Dolce moderator author
    2 years ago

    Julie, thanks so much for sharing your goals with us. Bet you’re a fun grandma! Love your thoughts on disappointment and always having a plan B. I guess life is a little bit rolling with circumstances and a little bit pushing against them, too. –Kim

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